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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.

ABSTRACT: OBJECTIVE:To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN:A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING:Community settings and nursing homes in the Netherlands. PARTICIPANTS:19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS:The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION:Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

SUBMITTER: Groen-van de Ven L

PROVIDER: S-EPMC5695519 | biostudies-literature | 2017 Nov

REPOSITORIES: biostudies-literature

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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.

Groen-van de Ven Leontine L Smits Carolien C de Graaff Fuusje F Span Marijke M Eefsting Jan J Jukema Jan J Vernooij-Dassen Myrra M

BMJ open 20171112 11

<h4>Objective</h4>To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.<h4>Design</h4>A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.<h4>Setting</h4>Community settings and ...[more]

PMID: 29133329

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Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.

Project description:BackgroundDespite health policy that promotes shared decision-making, it is not yet the norm in clinical practice. We aimed to assess how much shared decision-making Canadians experienced in health-related decisions in 2017.MethodsWe conducted a cross-sectional online survey in January 2018 with a Web-based panel of Canadians representing all 10 provinces. We assessed their involvement in health-related decisions made with a health care professional over the previous year by asking about 1) discussion of choice of treatment or care plan, 2) presentation of advantages and disadvantages, 3) exploration of ideas and preferences, 4) discussion of preferred option and 5) match between preferred and actual level of participation. We computed an average shared decision-making score (range 1 [never] to 5 [always]). We presented characteristics of participants and responses using descriptive statistics and explored variations across sociodemographic factors, jurisdictions, geographical areas and care settings (home care or not) using multivariate weighted regressions.ResultsOf the 1591 participants surveyed, 1010 (63.5%) reported receiving health care in the previous 12 months. The mean of the average shared decision-making score was 2.25/5 (standard deviation [SD] 1.16). After weighting, 42.8% of respondents reported that their health care professional often or always mentioned that they had a choice of treatment or care plan, 45.4% reported that advantages and disadvantages were often or always presented, 38.8% reported that they were often or always asked for their ideas or preferences, 40.2% reported that they were often or always asked about their preferred option, and 54.1% stated that their level of participation in decision-making often or always matched their preferred level of participation. Increasing age, rural setting, living in the province of Quebec and not being white significantly decreased the level of shared decision-making experienced. Older respondents (age ≥ 65 yr) receiving home care reported the least shared decision-making (mean score 1.7 [SD 0.5]).InterpretationCanadians in all 10 provinces experienced a low degree of shared decision-making in 2017, with variations across sociodemographic factors, jurisdictions, care settings and geographical areas. Further efforts to foster implementation of shared decision-making are needed and should take these variations into account.

Project description:BackgroundEffective interpersonal communication is critical for shared decision-making (SDM). Previous SDM communication training in nephrology has lacked context-specific evidence from ethnographic analysis of SDM interactions with older patients considering treatment options of end stage kidney disease (ESKD). This study explores communication strategies in SDM discussions in nephrology, specifically focusing on older patients considering dialysis as kidney replacement therapy (KRT).MethodsWe conducted a qualitative study analysing naturally-occurring audio-recorded clinical interactions (n = 12) between Australian kidney doctors, patients aged 60+, and carers. Linguistic ethnography and qualitative socially-oriented functional approaches were used for analysis.ResultsTwo types of communication strategies emerged: (1) Managing and advancing treatment decisions: involving active checking of knowledge, clear explanations of options, and local issue resolution. (2) Pulling back: Deferring or delaying decisions through mixed messaging. Specifically for non-English speaking patients, pulling back was further characterised by communication challenges deferring decision-making including ineffective issue management, and reliance on family as interpreters. Age was not an explicit topic of discussion among participants when it came to making decisions about KRT but was highly relevant to treatment decision-making. Doctors appeared reluctant to broach non-dialysis conservative management, even when it appears clinically appropriate. Conservative care, an alternative to KRT suitable for older patients with co-morbidities, was only explicitly discussed when prompted by patients or carers.ConclusionsThe findings highlight the impact of different communication strategies on SDM discussions in nephrology. This study calls for linguistic-informed contextualised communication training and provides foundational evidence for nephrology-specific communication skills training in SDM for KRT among older patients. There is urgent need for doctors to become confident and competent in discussing non-dialysis conservative management. Further international research should explore naturally-occurring SDM interactions in nephrology with other vulnerable groups to enhance evidence and training integration.

Dataset Information

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.

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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.

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